During December we had been discussing with Ryan the need for his central line. This line has been invaluable and was an access for IV medications, drugs and blood products for the past 3 and a quarter years and affectionately called his 'wigglies'. In the last few months it has only been used once every 4 weeks but each week I flushed it at home with heparin to stop it blocking and also changed the plaster which secured it at the site it exited his chest. Ryan still needs IV access every 4 weeks and so we made a list of Pro's and Con's : The only Con being the need for a cannula as Ryan is not great having needles but the list of Pro's was long: deep baths, showers, swimming, karate, freedom to play rough and tumble with his friends, being able to play without mum and dad watching like a hawk and for us not having an automatic admission to hospital for IV anti-biotics if he gets a fever over 38.0 degrees. And so on Tuesday the 7th January 2014 at 9.30 am Ryan went into theatre to have his line removed - a huge milestone for all of us. The procedure was straightforward and took only a matter of minutes but as he needed a general anaesthetic it meant a morning in hospital. The previous week the line had been used for the last time for the 4 weekly infusion of immunoglobulin, which he needs to support him while his immune system is very low, and for the blood draw to reduce his iron overload. After a week, when the site had healed, he had his first long shower in years, he loved the feeling of the water running down his face and stood in there for ages giggling which was lovely to hear. Next week is his first infusion via a cannula and we are hoping that he doesnt find this too traumatic. He asked me to take these photo's to share with everyone:
|Going, Going, Gone!|
Last week he had a routine full body MRI scan to check for any visible evidence of disease. Ryan has scans approximately every 3 months. There is no set protocol for this but we agreed with his consultants to alternate between MRI and MIBG and to do bone marrow biopsies every 6 months. I have seen him have this scan so many times but it still amazes me that at his young age he can lie in the scanner for 40 minutes or more, completely still! I didnt take a photo this time but this is the last scan in July 2013 and it was exactly the same this time (although Gareth has finally stopped wearing shorts!) We await the results.....
|If you look carefully you can see his toes!|